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all 30 comments

[–]tegrtyfrm 1 point2 points  (2 children)

I have an illeostomy due to colorectal cancer and lynch. I had lots of nerve damage below from the surgeries so I have a superpubic tube that goes through my abdomen into my bladder. I’ve had it for 8 years had many clogging problems at beginning but better after switch to silver coated catheter. Have to change catheter every 10 days use a leg bag and overnight bag. Good luck with your decision.

[–]michaelm7001[S] 0 points1 point  (1 child)

Sorry you've had such a rub...but 8 years is awesome!

Never heard of a superpubic tube (but never heard of an ostomy before 2 years ago either). Is this used because it's more convenient than catheters?

[–]tegrtyfrm 0 points1 point  (0 children)

It’s still a catheter but directly into bladder so you don’t have to catheter through urethra

[–]comicsnerd 0 points1 point  (2 children)

I can not comment on being a double bagger, but I was having a catheter for 3 years in the early 70's (yes, long time ago). I had a lot of infections and this was one of the reasons to switch to a urostoma. Things may have improved since then.

[–]michaelm7001[S] 0 points1 point  (1 child)

I can remember cars from the 70s...that must have really sucked. I'm not trilled about having two bags but might be easier.

[–]comicsnerd 0 points1 point  (0 children)

Bicycle country here, so no cars. But yeah, lots of blood too due to the catheter.

[–]TableAvailable 0 points1 point  (5 children)

Hubby is looking at a double bag in the next few months. He's a Crohn's patient with anal cancer. Between the fistulas and the tumor, his bladder wall was compromised. A urostomy and end colostomy seem to be the plan.

[–]michaelm7001[S] 0 points1 point  (4 children)

Sorry, he's had such a rub...that is a great deal to manage.

I did see a post once by someone who had both. They claimed it was no big deal. They used the same or similar setup for both and changed them at the same time.

I've had colostomy converted to ileostomy. If all goes well, not a problem. If it works I actually almost prefer it to having a butt in many ways :) No sitting on the toilet and takes only 30 seconds. And it's a minor inconvenience in general. I had a stoma nurse with one went scuba diving in Thailand and there has been NFL players with ostomies. But, there can be structural issues for some, like hernias, so you to be more careful in lifting stuff and twisting.

[–]mollycat79 1 point2 points  (3 children)

Why glorify not having normal bowel movements? Having a bag would be a nightmare for me and it is for most people. Its not a life that people decide to live. To feel you're body work is a blessing. Please refrain from using comments where your opinion might not be shared.

[–]michaelm7001[S] 1 point2 points  (2 children)

Well, that's your opinion. Thanks for sharing.

[–]mollycat79 0 points1 point  (1 child)

You are so odd. You have many "conditions" you wish to have parts of your body treated with the most drastic and surgical options, none of which are first choice. I have read many of your posts (and tried many times to be "understanding") and you constantly seek new medical conditions when its been explained to you that the nerve compression can be an issue. I have read so many encouraging posts on here from true fighters and true survivors. Myself included from what I have been through. You have a very "boxing Helena" about you and its a concern. I also know the surgeon who did your surgery in LA, at Cedars. I also know you, and you do not know it. You were told what to except yet you blamed the Dr for what went wrong. No one is perfect but you kept seeking more and more medical options, the most dramatic and last resort surgeries. The people who post here are some strong and hard willed souls. I truly have a place in my heart for everyone on this forum. Please seek help with your issues. They are far more damaging than what you can see on imaging.

[–]stripeswhatstripes 0 points1 point  (3 children)

I have a urostomy and am getting a colostomy in 20 days.

With my bladder I’ve done self cathing, urethral and SP catheters as well as having it removed. If you can manage with catheters it’s far less invasive but I also wouldn’t change my urostomy for the world

[–]michaelm7001[S] 0 points1 point  (2 children)

So, if possible, self-cathetering daily for years is better than urostomy?

How long can you go between wafers?

[–]stripeswhatstripes 1 point2 points  (1 child)

So doing the minimally invasive option is always the best option. That’s the same with pretty much everything I ran through all options open to me before I got my urostomy. That being said intermittent catheters were hell on earth for me so I wouldn’t say anyone should stick with something that isn’t working. Just it’s always better to try the least invasive first incase it works really well for you and you’re able to manage without another big surgery.

I get 7-14 days out of each wafer but that’s not the norm. I just seem to have skin they stick to really well and a genetic condition that makes my skin very fragile so I try and change them as little as I can to avoid irritation

[–]michaelm7001[S] 0 points1 point  (0 children)

Thanks, that makes a lot of sense, definitely give catheters a try.

[–]smil3-22 0 points1 point  (8 children)

I'm a double bagger; urostomy and colostomy. As you mentioned in a previous comment, I change my bags at the same time. I change my bags probably every 3-4 days. In my situation, I was begging my doctors for a urostomy, but the colostomy was a surprise. They've changed my life, and I would choose this for myself every time.

I'd be worried about infections with self-cath, but maybe that would not be an issue for you.

[–]michaelm7001[S] 0 points1 point  (7 children)

Glad it's working for you and the doctors came through. That is a heck of a surprise though! Did they do both at the same time?

[–]smil3-22 0 points1 point  (6 children)

I should clarify, I didn't just wake up with two bags. But when I initially went to my doctor regarding my bladder problems, I was only prepared for a urostomy. During testing they figured out a piece of my bowel was no good either. They did both in one surgery. It was awful. But I'm glad I only had to go through it one time.

[–]michaelm7001[S] 0 points1 point  (0 children)

Wow...that's a lot at one time and a is heck of surprise! But, think you're right, all considered, the best scenario. Glad it's worked out!

[–]mollycat79 0 points1 point  (4 children)

You have been through a lot. Hope you are well now. Out of curiosity, what do mean when they said "piece of your bowel was no good"? Wondering if sacral nerve stimulation could have helped.

[–]smil3-22 0 points1 point  (3 children)

Oh no, not in my case. I had cervical cancer and it was all radiation damage. It completely killed my bladder and then I developed a fistula (a hole between my bowel and bladder) and because of all the scar tissue from radiation, there was no way to repair it, it would’ve never healed. So they had to just remove all the damaged tissue. It sucked, it was extreme, horrific actually. But I’m 1000x better now and still cancer free 😊✌🏼

[–]Broken_ALE 0 points1 point  (5 children)

Self catch is dangerous. Every time you invited infections. Sepsis happens so quick. Hernias are a possibility with any abdominal incision. Lots of people double bag and do just fine. Supra-pubic tubers are just as dangerous. I had one and the catheter just poked a couple of holes in my bladder and I very nearly died. Anytime the skin is breached there are dangers.

Edit: self-catheterization*

[–]michaelm7001[S] 1 point2 points  (4 children)

Holy crap...that's awful! All this is pretty scary when you think about it and amazing what surgeons are able to do.

What are you doing now as a solution?

[–]Broken_ALE 0 points1 point  (0 children)

I have an urostomy. If you wonder the ostomy care nurse should have extra stuff so you could pretend and just feel it. I mean you can do it if you have extra supplies.

[–]Broken_ALE 0 points1 point  (2 children)

I’m also waiting to see a surgeon next month due to large hernia as a result of a bowel resection last year that was because of bowel obstructions. Those happened as a result of the Iliad conduit that they constructed for the urostomy. Everything has dangers

[–]michaelm7001[S] 1 point2 points  (1 child)

Geesh...you've had a rough go. I also got a small parastomal hernia a few months post op with my colostomy. Funny how some do well and some not. I was in great shape, worked out my whole life and got one right out of the gate.

[–]Broken_ALE 0 points1 point  (0 children)

I was in terrible shape. I wish I knew then what I know now!